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Monday, July 29, 2013

Upcoming Surgery

Evan needs to have his ears cleaned out under anesthesia once a year. This deep clean will remove any skin debris attached to his ear drum which is much too sensitive to remove during office visits. He had this done last year and all went well. We are well over the year mark as we ran into some problems with the staff in charge of scheduling at Yale, for his May procedure (long story short- I called the night before to find out the time of surgery and they told me he was not scheduled for surgery, to later learn the doctor was waiting for us the next morning) As if there isn't enough anxiety consuming my body thinking about Evan "going under", this hiccup really boiled my blood.

We were well over the year mark for a cleaning, he missed a lot of therapy sessions for pre-op visits and I was mentally ready for him to go into surgery after stuffing his face all day long. Then to find out at 10pm the night before that it wasn't going to happen made me break down in tears. Honestly, I was quite surprised that Yale messed up as we have never run into any problems with this hospital before. Now we have to do it all over again. Pre-op visits and missing the last two days of his summer session and therapies at preschool.

My anxiety has risen as we added another procedure to the list. We want to avoid Evan from "going under" more than necessary in one year. As the ear cleaning is non invasive and a pretty "simple" procedure he is also having surgery done on the muscle of his eyes. This makes me a tad bit more nervous. The procedure will (hopefully) correct the Strabismus issue going on with Evan's eyes. The muscle in his eyes are weak, causing him to cross or turn in an eye more than it should go. This surgery is crucial to be done at early ages to avoid the loss of depth perception or binocular vision. Evan's dermatologist was completely on board with this as many of his patients have needed this surgery as well.

Notice his left eye is turned in more.

It switches back and forth depending on the direction he looks.

Of course the risks make me nervous never mind the fact he'll "be under" for a good 4 hours. It's going to break my heart as he's taken away by the nurses to get the anesthesia. Most times they recommend you not to stay with your child as they go under since it not something you would want to witness. I asked to go with him the last time and they advised against it. But now that Evan is much more aware, once he leaves my arms I know he is going to freak out! This time I just may have to go with him!

Wednesday is the surgery so tomorrow I will be working really hard on filling him up! Ill keep you all updated with how it goes. Im sure he will be fine as this will be his 5th time under anesthesia but the new procedure has me more concerned. And hopefully it will correct the strabismus and he will benefit from it. I'm also very anxious for those ears to get a good cleaning as I strongly feel it could be the reason for his delays in speech. Sometimes, certain "words" or sounds he makes sends me a red flag that he has a hearing impairment. So I am hoping he'll be busting out some new sounds (diagraphs are hard for him) and sentences when this is said and done!

This is what I have to do multiple times a week to keep the nooks and crannies of his ear clean...

As well as going into the canal to scoop out skin. I can't imagine how much builds up deep after a year

1 comment:

Hi De De , my son had to have surgery on his eyes too, to correct a similar turn .. he was twelve and had become so clever he could switch 'on' and 'off' each eye so one would turn then the other just to freak out the optometrist and keep her on her toes. I stayed with him until he fell asleep. No way was I leaving him there, because I thought "if I'm scared to see it, imagine how scared he must feel". Wasn't so scary at all. Hope Evan has come through well. xxx

"....Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. Ichthyosis affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime....."

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About this blog

This blog is dedicated to Ichthyosis Awareness as well as sharing Evan's story as we experience the challenges and triumphs while living with Harlequin Ichthyosis.

About Me

Mommy to an amazing little boy who makes me smile each and every day. With two degrees sitting on the back burner (Master's in Education and Bachelor's in Fashion Design) I spend my days caring for my child with Harlequin Ichthyosis.
Learn more at: www.FirstSkinFoundation.org